The National Prostate Cancer Register of Sweden
The National Prostate Cancer Register of Sweden
Pär Stattin 0 2 3 4
0 2 3 4
0 Regional Cancer Centre Uppsala Örebro, Uppsala University Hospital , Uppsala , Sweden
1 Ingela Franck Lissbrant
2 Department of Surgical Sciences, Uppsala University , Uppsala , Sweden
3 Department of Oncology, Sahlgrenska Academy , Göteborg , Sweden
4 Department of Urology, Ryhov County Hospital , Jönköping , Sweden
Cancer quality registers are attracting increasing attention as metrics for quality assurance and improvement. Comprehensive, high-quality data in nationwide population-based registers are also an ideal basis for observational studies. Here we describe the organization of the National Prostate Cancer Register (NPCR) of Sweden as well as some examples of reports and results from analyses based on NPCR and other health-care registers. A recent surge in interest in the data available from quality registers in Sweden in many fields led to an increase in the financial support to quality registers between 2012 and 2016. Currently, more than 80 quality registers in various fields of medicine are funded by the Swedish Association of Local Authorities and Regions . These quality registers can broadly be divided into two categories: registers for specific diagnoses and registers of surgical procedures. Several of these registers have had
National Prostate Cancer Register (NPCR) Sweden; Prostate Cancer data Base Sweden (PCBaSe); clinical cancer register; prostate cancer; dashboard panel; online registration
a major impact on clinical practice in Sweden. For example,
the Swedish Hip Arthroplasty Register initiated in 1979,
a procedure-specific register, has had a strong impact on
the quality and long-term outcomes following hip implant
surgery . The revision rate of hip implants in Sweden,
which is the lowest in the world, is attributed to the
systematic feedback on the failure rate of different implants.
Another example of a successful use of a quality register is
the register-based randomized clinical trial, i. e., a trial in
conjunction with a register in which outcome is assessed by
use of data in a register. This study design has been
successfully pioneered in the cardiovascular field . In
comparison with the procedure-specific hip register and registers of
myocardial events in which the time to many crucial events
is short, selecting appropriate quality indicators for prostate
cancer care that can be assessed shortly after diagnosis and
treatment is more challenging since disease progression and
death from prostate cancer mostly occur many years after
Cancer quality registers, aka clinical cancer registers,
have been developed in some countries. These registers
collect data that are intended to be used as metrics for
quality assurance and quality improvement . To meet these
goals, data collection needs to be complete and data must
be rapidly collated and reported back to each department.
Furthermore, relevant quality indicators of care must be
selected, and these should then be reported in a user-friendly
format. Quality indicators are ideally selected from national
and international evidence-based guidelines, for which the
medical profession has reached a consensus.
In addition to serving as metrics for clinical quality
assurance, quality improvement and benchmarking between
different health-care providers, comprehensive data on
cancer characteristics and cancer treatment collected in clinical
cancer registers are an ideal basis for observational studies.
In this paper the development and organization of the
National Prostate Cancer Register (NPCR) of Sweden, a
clinical cancer register, are described and some examples of
reports and results from analyses based on NPCR and other
health-care registers are provided.
History and set-up of the NPCR of Sweden
In 1987 the first Regional Prostate Cancer Register was set
up in the South-East health-care region of Sweden. Other
health-care regions joined and since 1998 all six health-care
regions in Sweden have been participating in the NPCR.
In the NPCR, detailed data on diagnostic work-up,
cancer characteristics, and primary treatment are registered for
98% of all prostate cancer cases compared with the Swedish
Cancer Register, to which reporting is compulsory and
mandated by law. Since 2000, tumor differentiation has been
registered according to the Gleason classification, and from
2007 data on prostate volume, number of biopsies, number
of biopsies positive for cancer, and total linear extent of
cancer in the diagnostic biopsies are also registered.
Curatively intended radiotherapy has been registered in detail in
a separate form since 2007. In 2015, a separate form for
radical prostatectomy (RP) was introduced, also allowing
for registration of RP performed after an initial period of
active surveillance. Registration in the NPCR is performed
by designated staff at each department, usually secretaries
or nurses, at each department. In recent assessments, data in
the NPCR were found to be complete, representative, and
of overall high quality [5–7]. Information on the registered
variables can be found on the NPCR website (www.npcr.
se) in Swedish and in English.
Organization of work in the NPCR
The work of the NPCR is led by a steering group with
two representatives, one urologist and one oncologist, from
each of the six health-care regions in Sweden. In
addition, experts in various areas including surgery,
radiotherapy, pathology, epidemiology, quality of life research, and
biostatistics as well as two patient representatives are also
part of the steering group. As a platform for registration,
NPCR has been using the Information Network for Cancer
Care (INCA), the national quality register platform for
cancer quality registers since 2007. Data on more than 400,000
cancer cases are held at INCA, which is used as platform for
more than 30 Swedish quality registers. Since INCA holds
sensitive personal information on an individual level, access
is limited to authorized staff at reporting units. Registration
is made by use of four different forms online: one
diagnostic form, one form for work-up and medical treatment,
and separate forms for radiotherapy and radical
prostatectomy. These forms have several logical controls, for
example, dates for procedures are checked for chronology. As
of January 2015, data are entered directly into the NPCR
database at INCA as a default and uploaded and displayed
within 24 h. Subsequently, data are monitored for capture
and completeness by staff at each RCC. Data are requested
from the urological department for men who have been
diagnosed with prostate cancer based on morphological
examination at a pathology department but who have not been
reported to the NPCR.
The NPCR is supported by the Confederation of
Regional Cancer Centres and the National Center for Prostate
Cancer is at RCC Uppsala where there is a support team
with a coordinating nurse and a biostatistician. From a
legal point of view the responsible agent for a quality register
is the authority that holds the register. For NPCR it is the
county council of Uppsala. Thus, data are held at the INCA.
For research it can then be exported from the INCA after
approval of a Research Ethics Board. Each year, the NPCR
arranges retreats for reporting staff at urology and oncology
departments in Sweden with the ultimate aim of improving
the quality of registration. This retreat usually starts around
6 p.m. with a keynote presentation based on the NPCR,
having dinner and time to interact socially, which is extremely
important for the registration staff; on the following day
there is a full-day workshop on registration.
An annual report with data presented at department
level is publicly available at www.npcr.se in Swedish
and in an English version without comments. The report
consists of comparisons between health-care providers,
departments, counties, and regions and also nationwide
changes over time. Three examples of the latter type of
figures are demonstrated in Fig. 1. In addition to the annual
report that is 100+ pages, a short newsletter that targets
administrators, patients, and the general public highlights
an important aspect of the annual report. In December 2016
an online report was launched and can be accessed on the
NPCR website. In this interactive report, the viewer creates
exactly the specific report he/she wants to see, e.g., the
change in frequency of radical prostatectomy at a specific
hospital for high-risk prostate cancer in men 70–80 years
old from 2007 to 2015.
Since 2007, PROM questionnaires have been made
available for distribution to men who undergo curative treatment.
Each department has to distribute baseline questionnaire to
be filled in before treatment, whereas subsequent
followup questionnaires are centrally distributed. The capture rate
Fig. 1 a Time between diagnosis and registration in the NPCR for cases of prostate cancer in 2014 and 2015. b Proportion of cases according to
prostate cancer risk categories 1998–2013. c Relationship between hospital surgical volume of radical prostatectomies and proportion of positive
surgical margins. (Modified version of the National Comprehensive Cancer Network [NCCN] risk categorization is used in NPCR): 1 Low risk:
T1–2, Gleason score 6 or lower and PSA <10 μg/l; 1a very low risk: T1c, PSA < 10 μg/l, Gleason score 6 or lower, no more than four biopsies with
cancer, total length of biopsies with cancer < 8 mm, a total of at least 8 biopsies taken, PSA density < 0.15 μg/l/ml; 1b low risk (others): low risk
that is not categorized as 1a; 1c low risk (missing): missing information for categorization of low risk according to 1a/b; 2 intermediate risk: T1–2,
Gleason score 7 and/or 10 < PSA < 20 μg/l; 3a localized high risk: T1–2, Gleason score 8–10 and/or 20 < PSA < 50 μg/l; 3b locally advanced: T3
and PSA < 50 μg/l; 4 regionally metastatic: T4 and/or N1 and/or 50 < PSA < 100 μg/l; no distant metastases (M0 or MX); 5 distant metastases:
M1, bone scan shows signs of metastases, and/or PSA < 100 μg/l; 6 missing: missing information for categorization according to above
Fig. 2 Percentage of men
with erectile dysfunction (ED)
at baseline (before treatment)
and 1 year after treatment.
No ED No erectile dysfunction:
International Index of Erectile
Function-5 (IIEF-5) score > 20,
Mild ED IIEF-5 score: 16–20,
Moderate ED IIEF-5 score:
11–15, Severe ED IIEF-5 score:
Fig. 3 “What’s going on”:
Dashboard panel demonstrating
result for a specific urology
department for ten selected
for patient-reported outcome measures (PROM) has been
low, mostly due to logistical difficulties in the distribution
of the baseline questionnaires. Data are available for 4645
men and show that the occurrence of adverse effects is
considerable, in particular erectile dysfunction after surgery is
common (Fig. 2). In 2015, PREM questionnaires were filled
in by 1348 men and the response was largely positive with
good ratings for information to the patient about the
disease, extent of disease, treatment and treatment outcome,
and anticipated adverse effects of treatment.
Recent developments: “What’s going on,”
a dashboard panel
In 2014, NPCR launched “What’s going on,” a dashboard
panel demonstrating the results for ten quality indicators at
each department online within 24 h of registration (Fig. 3).
The design of the dashboard panel has been described in
detail elsewhere . In brief, ten quality indicators were
selected from the 2014 National Prostate Cancer Guidelines
and include time to report to NPCR, waiting times,
desigFig. 4 “What’s going on”:
Dashboard panel demonstrating
result for a specific oncology
(radiotherapy) department for
nine selected quality indicators
nated clinical nurse specialist, multidisciplinary conference,
adherence to guidelines for diagnostic work-up and
treatment, and documentation and outcome of treatment. For
each indicator, three performance levels were defined by
the NPCR steering group together with the chairs of the
guidelines and a care program.
The dashboard panel “What’s going on” (Koll på läget in
Swedish) is presented at the INCA platform and provides
at-a-glance user-friendly feedback to care providers. It is
not publicly available. In 2015, a similar dashboard panel
and interactive set of reports was set up for radiotherapy
(Fig. 4). In addition, there is a set of interactive of reports
where health-care providers can select indicators for
specific groups of patients and compare their results with the
results at other departments in the region, or in all
counties in Sweden, and comparisons can also be made between
counties and regions (Fig. 5).
In order for these reports to fulfill their full potential for
a major impact on clinical practice, their use has to be
promoted by stakeholders including department and hospital
leadership, clinicians, and patient representatives. In light
of an international trend of systematic data collection for
quality assurance, we believe that our experiences can be
of value for similar initiatives outside of Sweden.
Fig. 5 a Proportion of men with prostate cancer in each health-care region in Sweden who had been assigned a navigator nurse during work-up
and treatment in 2015. b Proportion of men with expected survival exceeding 5 years (age < 80 years) with localized high-risk or locally advanced
prostate cancer examined with bone scan or other bone imaging by health-care region
PPC: graphical display of data for men with
castration-resistant prostate cancer
The Patient-overview Prostate Cancer (PPC) is a new
type of longitudinal quality registration that was recently
launched by the NPCR. It is currently used for registration
of men with hormonally treated prostate cancer, in
particular castration-resistant prostate cancer (CRPC). There is
a need for efficient data display for men with CRPC that is
not met by current medical charts in Sweden. The disease
history of these men is often complicated and sometimes
long and it is time consuming to get an overview of this
history in conventional electronic medical charts. Therefore,
oncologists and urologists in the NPCR, together with the
IT construction team at RCC Uppsala, have created PPC to
meet the need for efficient data display. Furthermore, since
PPC is a database on the INCA platform, any statistical
software can be applied to these data.
Data are entered by staff and physicians into the PPC,
which can subsequently provide:
● a) A dashboard panel displaying the patient’s status in
a user-friendly graph with an immediate gain for treating
physician and patient in the clinic (Fig. 6).
● b) Metrics on care to department leadership including use
and efficacy of drugs. For instance: How many patients
are currently using drug A in our department? For how
long did these men use drug A? How was quality of life
affected by drug A?
● c) Metrics for benchmarking of prostate cancer care. A
non-blinded report on performance at multiple
departments is an ideal basis for peer comparison, which is an
efficient way of improving care without the drawbacks of
● d) Comprehensive longitudinal data on treatment of men
with advanced prostate cancer are collected, which will
be a valuable resource for research.
The dissemination of PPC is led by a working group of
oncologists, urologists, and nurses. To date, PPC has been
introduced at 22 departments in Sweden and data on 2000
men have been registered. A helpdesk has been set up with
access by phone and e-mail. The first national meeting for
reporting staff was held in November 2016. Quarterly
reports are distributed to each department with data on their
use of drugs for CRPC (abiraterone, enzalutamide,
radioligands, and chemotherapy) and with a 90-day latency a
quarterly report is also distributed to pharmaceutical companies
that subscribe to information from the PPC. The NPCR
intends to develop the PPC so that it can also be used for men
on active surveillance since there is also an unmet need of
a structured follow-up of this large group of patients who
are often monitored for a long time.
Fig. 6 Patient-overview Prostate Cancer (PPC) dashboard panel with timeline of disease history, therapy, and drug treatment. The dashboard panel
shows a large set of patient data in a reader-friendly graph. This graph contains information from 90 pages in a medical chart. Översikt overview,
Besök outpatient visit, Bilddiagnostik imaging, Strålbehandling radiotherapy, SSE symptomatic skeleton-related event, Labbprov results from
blood tests, Läkemedel drugs, KR complete response, R response, S stable, P progression, Datum för inmating date for registration, Sammantagen
bedöming global assessment
Some examples of improvements in clinical care
Although causality cannot be proven, we believe that there
have been some effects on Swedish prostate cancer care as
a result of registration and reporting in the NPCR.
Less use of unnecessary investigations
Since the early 2000s, the NPCR has regularly highlighted
the proportion of men with low-risk prostate cancer who
underwent a bone scan at each department in its annual report,
in order to decrease the use of unnecessary investigations.
There was a strong decrease in the proportion of men with
low-risk prostate cancer who underwent bone scan, down
from 45% in 1998 to 3% in 2008 and 2009 .
Since SPCG-7 showed that there was a decrease in
mortality in men with locally advanced prostate cancer who
received androgen deprivation therapy (ADT) and
radiotherapy compared with ADT only , there has been an
increase in the use of ADT plus radiotherapy. For
example, among healthy men aged 70–80 years with high-risk
nonmetastatic prostate cancer, the use of curative treatment
increased from 10% in 2001 to almost 50% in 2012 
and we believe the transparent reporting in NPCR for each
department has contributed to this increase.
Fig. 7 Linkages and number of cross-linked men in the Prostate
Cancer Database Sweden (PCBaSe) 3.0
Less use of treatment for low-risk prostate cancer
In 2007, the Swedish guidelines for prostate cancer care
recommended active surveillance for patients with low-risk
prostate cancer. There has been a subsequent strong
increase in the use of active surveillance for men with low-risk
prostate cancer from 40% in 2009 up to 74% in 2014 .
An even stronger decrease was observed for very low-risk
prostate cancer (not N1or M1, stage T1c, Gleason Grade
Group 1, PSA density less than 0.15/ng/ml/cm3, four
positive cores or fewer, and less than 8 mm of cancer in biopsies)
 up from 57% in 2009 to 91% in 2014.
For some other quality indicators reported in “What’s
going on,” no improvement has been observed. For example,
waiting times for men with prostate cancer have remained
long in every step of the diagnostic work-up and treatment.
By use of the unique Swedish person identity number, the
NPCR has been linked to a number of other national
population-based health-care registers and demographic databases
in Prostate Cancer Database Sweden (PCBaSe), a platform
for clinical research (; Fig. 7). In later versions of the
PCBaSe, prostate cancer-free control men, randomly
selected from groups of men matched to the index case on
birth year and county of residence, were included to be
used in case control studies. Since its inception in 2009,
the PCBaSe has been the basis for 100 research papers on
a wide range of topics including health-care patterns,
outcome studies, and postauthorization safety studies (PASS)
of rare adverse events of drug treatment (for a complete list
of publications, see www.npcr.se/publikationer).
In conclusion, there is a need for a structured and rapid
collection as well as a user-friendly display of data to be used
as metrics for quality assurance and quality improvement
in modern prostate cancer care. In Sweden, the NPCR tries
to meet this need.
Acknowledgements This project was made possible by the
continuous work of the National Prostate Cancer Register of Sweden
(NPCR) steering group: Pär Stattin (chair), Ingela Franck Lissbrant
(vice chair), Anders Widmark, Camilla Thellenberg Karlsson, Ove
Andrén, Ann-Sofi Fransson, Magnus Törnblom, Stefan Carlsson, Marie
Hjälm-Eriksson, David Robinson, Mats Andén, Jonas Hugosson,
Johan Stranne, Maria Nyberg, Göran Ahlgren, René Blom, Lars Egevad,
Calle Waller, Olof Akre, Per Fransson, Eva Johansson, Fredrik Sandin,
Open Access. This article is distributed under the terms of the
Creative Commons Attribution 4.0 International License (http://
creativecommons.org/licenses/by/4.0/), which permits unrestricted
use, distribution, and reproduction in any medium, provided you give
appropriate credit to the original author(s) and the source, provide a
link to the Creative Commons license, and indicate if changes were
Pär Stattin professor, consultant, chair NPCR
Fredrik Sandin biostatistician NPCR
Karin Hellström registered nurse, coordinator NPCR
David Robinson urologist, investigator
Ingela Franck Lissbrant oncologist, vice chair NPCR
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